Sujata’s Story – Cipro Poisoning and Recovery

In July of 2014, I took a course of Cipro – a drug that belongs to the class known as fluoroquinolones.I knew I had sensitivities to medications in the past like complete fatigue and muscle pain from Metformin, and various allergies to other medications.Cipro was one I could tolerate in the past for a UTI.I am a pharmacist.I had been led to believe, by the warnings on fluoroquinolones, that the risk of toxicity was reserved for those over the age of 65 with impaired kidney function.That wasn’t me.I would be safe….So I thought…

Backing up a little – prior to this course of antibiotics, I was teaching 5 power spinning classes a week, boot camps and yoga.I had run the Nike Women’s Marathon in San Francisco, and the Big Sur Marathon 6 months later.I had run several half marathons and little races just for the heck of it.I had just gotten back from a trip out West where my four children and I climbed mountains, and rocks, and ran and hiked – I was at the top of the world and on top of my game.

So by day 5 of this antibiotic, I started feeling a twinge of something in my right elbow.It seemed peculiar because I was very conditioned and very strong.Over the course of the next week or so, all the other tendons, muscles, joints, vision, hearing and nerves became involved.Slowly but surely, whatever was happening was progressing to the point that I was inimmense pain.I could not walk, I could not lay down, I could not sit without pain.My brain function started declining.I was adding up my Pharmacist Continuing Education credits to turn in that year, and I could not add 1 plus 1.5.I was adding out loud, so when my daughter heard me and I could not put this together, she had to help guide me through what the answer might be. My heart sank – how could I possibly be a functioning adult, single mom, and competent pharmacist if I couldn’t add 1 plus 1.5? I could not walk up the stairs.I crawled.I could not squeeze a sponge or open the top of a milk jug.I couldn’t unscrew the tops of my supplements. I ended up in a wheelchair, basically requiring the assistance of someone all the time.

I had to quit working as a pharmacist because 1.I couldn’t stand.And 2.I couldn’t think.I found myself looking at medications, numbers, prescriptions, and not knowing what I was looking at.Prior to this, I was a whiz at math.All of a sudden, numbers confused me.It was like all of them were being thrown at me all at once and I couldn’t make sense of them. It was completely overwhelming. I didn’t hesitate to stop working because I did not want to harm anyone.At that point, in addition to all the other stress, financial stress set in as well.

I became severely sensitive to light and sound.If there was too much of anything around, my brain couldn’t process it.It would make me want to crawl out of my skin.

I wore wrist and ankle braces day and night, I slept with pillows propping me up and taking pressure off of certain sensitive parts of my body – which of course migrated all night and day.That didn’t make for restful sleep.I might have had 10 or 15 minutes in between sleep episodes which were interrupted by immense nerve pain.I remember one night thinking I was going to die.All of my muscles were cramping up, including my chest and back and fingers and legs and arms – I thought for sure my heart would be the next thing to go.

As I researched online for reversal of Cipro toxicity, all I found were countless recollections of people’s stories about devastation because of their reactions to fluoroquinolones.I read about people who had committed suicide because they couldn’t bear the pain.I read about people who had endured pain for the last 10 years and still had no hope.Back then, there wasn’t as much information as there is now.

I was 45 and had 4 children, for whom I am their only parent.I could not believe my life was going to transform from the most fit and active and strong I had ever been to being crippled, in a wheelchair and in chronic pain.Not only could I not believe it, but after a complete breakdown, I could not accept it.And this is where I began to rise.

Instead of searching for reversal of Cipro toxicity, I started thinking biochemistry and how things work at a cellular level.Thank goodness biochemistry and medicinal chemistry were my strong subjects in pharmacy school.And thank goodness I have a strong understanding of holistic healing.Everything was slightly slower because of my cognitive decline, but I was motivated.I couldn’t let this be the life my children grew up with.Through my research, I started finding basic things I thought would help – my focus was

How do I get rid of the poison in my body

How do I prevent further damage

How do I heal the damage that has been done

As I dove in, I got deeper and deeper into the toxicity of this medication – the mitochondrial damage that takes place, the neurotoxicity, the muscle damage, tendon ruptures, brain fog…everything.And slowly but surely I started finding solutions and healing myself.Not with the help of western medicine who denied anything was happening to me because the blood work didn’t show abnormalities.And for some reason, the three doctors I went to did not know enough about fluoroquinolone toxicity so they had to deny this was a case of it.According to them, it was so rare and only affected one tendon at a time.They put the label of fibromyalgia on it because they couldn’t come up with a better diagnosis code. However, they were quick to offer antidepressants, pain meds, and anything else to attempt to appease me.I declined.I couldn’t fathom the thought of putting another medication into my body to supposedly counter the damage another medication created. With chronic pain and stress, I developed adrenal fatigue – or HPA axis dysfunction, diabetes and migraines through this journey, but I still relied on getting to the cause of these as opposed to Western Medicine to mask what was happening at a cellular level. Even with cognitive impairment, I knew better and I trusted my intuition.I knew I was in charge of healing myself.Thank goodness.

It became my full time job to heal myself.I went from a wheelchair to finally being able to walk down the stairs.I started walking – to the end of the driveway and back.Then to the first driveway over and back.Eventually, I walked all the way around the block.Of course with repercussions, but I did it.And I gained hope.

I did panchakarma, a detoxification process using Ayurvedic practices.I started massage therapy – where the therapist was initially afraid to even touch my tendons because they were so brittle.I did massage therapy 4 times a week.I bought an Infrared (IR) sauna to help me make more mitochondria, since I couldn’t get to aerobic activity to replenish my damaged mitochondria.I did countless detoxes and purifications to clear the poisons out of my liver and body.I changed my diet completely to minimize inflammation throughout my body.I meditated.I meditated.I meditated.It was one of the only things that would give me a reprieve from the immense pain for about 30 minutes.Many, many other things I did…

Along with the alternative practices I used to heal myself, therapeutic doses of supplements played a large role.Had it not been for knowing how my body was damaged, by what chemical components of the medication and probable scenarios of what was going on – I would not have been able to supplement with the things I needed to heal.Healing has been consistently assessing, fine tuning, figuring out what works and what doesn’t work, adjusting to my body’s changing status, and being patient.

I am still healing. I don’t think I will ever be back to 100%.I can go two weeks between massages now.I think it is becoming more of a relaxation and pampering activity for me more than therapy.I’ll keep up with that.I can propel my body and still have energy at the end of the day. I sometimes outlast my loved ones that haven’t been afflicted with this poisoning. I am also able to eat with a little more flexibility and enjoy some of the things I love to eat.In moderation of course. I was recently out of the country and walked 13 miles a day for 7 days straight.I still had energy at the end of the day. I am thankful when I can get out and mow my own lawn.Or hike.Or bike.Or carry groceries in from the car. A few weeks ago I completed the Akron Half Marathon – whether I ran or walked it did not matter – it is something I never thought I would be able to do again.

Also through the healing process, I have brought my fasting sugars down from 200 to low 100’s. It is amazing how the body handles itself when it is not in chronic pain.I am now able to navigate my day with great energy levels and don’t feel so anxious and depressed.My brain works.I feel smart again. Numbers still sometimes confuse me, but I have accepted that not everything is going to be as it was.There are many new normals.But those normals do not include my children having a crippled mom or me being in a wheelchair and for that I am ever so grateful.

Through my experience and research…and most importantly, my recovery…I simply cannot stand by and watch others live with no hope of a better life. I am more excited than ever to reach however many people I can and help them live again. I still read countless stories of pure and utter devastation.It is heartbreaking.If anything in life has pushed me to how I can use my unique gifts, talents, and experiences to serve others, then this is it.

It is a rough hand we’ve been dealt.But you have the ability to heal yourself, given the right tools. I have taken my practice and devoted it to helping those afflicted with fluoroquinolone toxicity or fibromyalgia reclaim their health, their lives, and their hope. Journeywithsujata.com will launch by November of 2017, using my experience and research to find solutions for all of our unique needs.I look forward to helping to be a part of the solution.I’m here.There is hope.Always hold on to that.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

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157 thoughts on “Sujata’s Story – Cipro Poisoning and Recovery”

Sincerely and deeply thank you very much for what you wrote. I found your approach inspiring. I want to follow whatever else you write and would certainly be willing to share all the things that I have done that have proven helpful. We certainly have compatible motivations and I feel like I’ve been through several Rites of fire on this FQ journey. I certainly want to follow your blog and thank you so much for what you wrote. Bloody well done!

Thank you for your kind words and willingness to share and provide further insight! The FQ journey certainly does carry many Rites of fire. I am sorry you have had to experience this. We are all in this together. It is wonderful to have a community that can share trials and tribulations, and successes. I would love to hear your story, if you want to email me at spatel@wellnesswithsujata.com. My new site will include a blog but will provide so much more…I want to include pearls of wisdom to those suffering – so I would appreciate anything you have to offer regarding things you did that proved helpful to you!

Thank you Sujata for your story. It is so important for people to take full ownership of this awful journey we go through. It is hard, but we have to research and steer our own healing. I too got floxed in 2014 and feel a different person than I was then. My commitment to health and drive to adventure fully in life increased. The pharmacist perspective is very useful to the floxed world. I look forward to your new website.

Thank you for your comment. You are so right – this changes us completely. I feel like it makes us more grateful for the things we are able to do. It makes us more compassionate to those also suffering. It makes us want to live while we can, as we very well know that life can change in an instant.

I thank God for you! My daughter was 12 when she was floxed for treatment of a UTI. She has been battling for her life since. I can’t wait to see how you can help. She was brilliant, strong and happy. Now she is home bound, was in a wheelchair, and unable to get her mind working. I pray for your solutions to help others.

Lauren, My heart breaks yet again – especially when I hear that a precious 12 year old’s life was forever changed by this poison. How old is your daughter now? I am interested in learning more about her situation, as every single situation is different and requires different solutions. Feel free to email me at spatel@wellnesswithsujata.com. Much love to you and your daughter.

I get furious when I hear doctors say this is rare. Dr Charles Bennett (U of So carolina) estimated a couple years ago (and I am guessing these figures are very low) that 300,000 have died and millions more been injured by fluoroquinolones.

I see it says on your site you are still a registered pharmacist. How do you square this now knowing that so MANY medications do not actually heal, but rather mask symptoms?

L, I share in your feelings about this. It is absolutely unbelievable that doctors are still saying this is rare. Knowing that Cipro was released in 1987 and then criteria for fibromyalgia emerged in 1990, it is alarming how many people have probably been misdiagnosed and hence mistreated….as for the numbers you cited being a low estimate….let’s not forget the military soldiers deployed and forced to take these poisons….and then returning with debilitating, “unexplainable” symptoms. You are right – the estimates cited don’t even come close.

Thank you for asking about my registered pharmacist status. I became a pharmacist 24 years ago. I continue to keep my license because it is part of my credentialing that allows me to consult with patients and offer solutions to these devastating conditions. Without the license, I am not as legally able to do what I do.

I quit practicing pharmacy in the traditional sense because I simply could not stomach dispensing another poison. Yes, some drugs help save lives. But I fear the majority of them are unnecessary. You are right – they mask symptoms instead of actually heal. The way we approach health and well being in this country is alarming. A pill for every ill is not the way. I could go o for days about this.

I can assure you I will never dispense another pharmaceutical drug in this lifetime!

This is so encouraging. Thank you so much for your post and your website launch in Nov to help others like me! I am also 45 and have 4 children and I’m heartbroken and devastated. I’ve lost my job as a registered respiratory therapist and I just want to get my life back and help others thru this as well. Thank you for giving me hope.

Dear Donna, I am so very sorry to hear how your life has been impacted by this poison. Hope is always there. Hold onto that always. It is easy to get stuck in the despair. I know. I have been there. But we must always rise. There truly is hope. Ad we can be better than ever in new ways as we navigate through this journey. Please feel free to email me your story at spatel@wellnesswithsujata.com. I want to help in any way I can. Much love to you and your precious babies!

Thank you Sujata from the bottom of my heart. After reading your story I felt a smile on my heart. Yes….hope…it is such a beaitiful thing!!
I was floxed in Oct 2016 for uncomplicated UTI. I already was dealing with Hashimotos, Adrenal fatigue and Heavy metal toxicity. I was taking hydrocortisone during this time which I now know only made things worse. It took several months to figure out and accept I habe been floxed.
As I read your story more connections became apparent. It has been a long, hard 13 months. I still am homebound and not able to work. Yes…taking care of myself is my full time job.
I am grateful that you will be sharing more here in the very near future. I need you…we all need you.
You are an amazing light shed upon me during these days of darkness.
Blessings❤

Teresa, Your post brings tears to my eyes. I am so sorry you have been struggling through this. All of what you are telling me is a very familiar story. Ad I want to reiterate to you that there is definitely hope. Feel free to email me at spatel@wellnesswithsujata.com. Perhaps we can get the ball rolling prior to the launch of my new website. Much love to you.

Thank you Sujata for sharing your story. You helped me 3 years go when I was floxed. You shared with me over the phone what supplements would be helpful to me. Through a mutual friend (Nick) I had the privilege to speak with you. Still need neuropathy and back pain healing, otherwise I’m good.

Bekkie! Thank you for commenting! Since we last spoke 3 years ago, I have come across much more research and scientifically backed solutions. I am happy to hear you are doing better than back then. Sending love to you!

Thank you Sujata….I was first floxed in the late 80’s, 10+++ times over the next years. I had a severe Neuro, CNS breakdown the last time I took Cipro in 2013 and luckily my insurance covered an Neurologist at NYU Langone Clinic in NYC (MRI of Brain) He ruled out things, but no real diagnosis. I also had a bad response to Lariam (a FQ derivative) for Babesia in 2000, with hallucinating and Neuro symptoms. I was never aware of what floxing was. I was diagnosed throughout the years of sickness (from being Floxed…..by the way ……..I got my teaching degree, raised 3 children and dealt with a PTSD Vietnam Veteran spouse ……all the while sick from repeated floxings. Dozens of doctors diagnosed severe Fibromyalgia, Myofascial Pain Syndrome, Autoimmune Thyroiditis, B12 Intrinsic factor issues, Autoimmunity, Extreme fatigue, adrenal issues. Low Blood sugar etc. etc. Throughout it all , I have been very holistic and tried to maintain my faith and stability. I have improved……but hope to look at your new website.

Lin, Thank you for your comment here and also on my http://www.wellnesswithsuata.com website. My heart breaks for what you have been going through….especially because all of it was completely unnecessary. You are a strong, courageous woman. The fact that you got a degree, raised three children, dealt with your spouse’s PTSD….on top of the immense pain and seemingly lack of appropriate medical care….it must have been very lonely. But you have risen. That speaks so much about your faith and your resolve. I look forward to hearing from you in the near future. All my love to you.

I recently had a highly paid neurologist tell me cipro cant even cause tendon pain it is internet hearsay,what an idiot
well done Sujata youve done well,ive recently bought an infa red sauna hopefully it will help but a bit worried about how many days to use it etc

Andy, Oh my goodness…it is so frustrating to hear specialists speak as if they are experts in the field. Black box warnings on the fluoroquinolones should tell him otherwise. How sad, I am sure that countless people have been told that by their doctors. As a pharmacist who KNEW exactly what happened to me….and actually having sufficient training in medications….it was insulting to hear the same from my docs. What’s done is done…

I would recommend initially using your IR sauna for 30 minutes 3 days a week. Not knowing what your symptoms are and what your goals are, that’s a good start…Wishing you well and hoping to serve you if the need should arise!

Hi Andy- that is appalling. All he has to do is read the patient info leaflet. The idiot deserves a complaint but complaining takes emotional energy . How are you doing? Has the neuropathy improved at all?

Hi Madge no in am a total mess can hardly walk at the moment and had an ultrasound imaging showing tendon micro tares everywhere

LOctober 26, 2017 at 9:20 am

HI Andy…you may want to look into prolozone injections (procaine and ozone). It is injected directly into the tendon. I had it done on torn meniscus and months later, at the body healed itself, I ham vastly improved. (There is also something called prolotherapy which is similar, but NOT the same thing. I can’t tell you anything about that.) It is relatively inexpensive (mine cost $200 each knee). I got mine from my naturopath but some sports med doctors and integrative doctors offer this now. Again it is not a “quick fix.” It takes at least 3 months to see a difference but that is because it is helping the body to heal itself.

AndyOctober 26, 2017 at 9:25 am

I am having it done L I did mention it to you a long time ago on here somewhere when I read about your knee
It’s cheap in the UK and the guy is doing it for free because of my financial situation
I am going to get better Sujuta is helping me out ,I believe I can heal

LOctober 26, 2017 at 10:12 am

That’s great! And how sweet of him to do it for free. The other day I was squatting down to pet a dog, and it dawned on me. I NEVER would have been able to do that before the prolozone! One of the best treatments I’ve had post-cipro

Madge hirschOctober 28, 2017 at 8:49 am

I received the Cipro / Flagyl combo for diverticulitis but by iv so no leaflet! If I had had a leaflet I would have been alerted by the mild pain in my right Achilles tendon after about 24 hours and they might have stopped it. As it was I never made the connection and after 48 hours I felt really unwell with chest pain , tachy and pins and needles in my arms. Then they stopped the Cipro but never told me I was having a reaction to the drug and should not take this class of antibiotics again . I was 62 at the time and nobody asked whether I had had tendon problems before starting the iv. Since then the gastro consultant lied to me on the phone saying I had never had Cipro and falsified my treatment dossier when I asked for a copy saying I had had an Augmentin / Flagyl combo!. I don’t have the energy to pursue her.

The absolute WORST MD I saw post floxing was a neurologist. AT the point I saw him I was gasping for breath, shuffling to walk, felt like I was dying, in pain, blurry-eyed, and had dozens of other problems. He was the last MD I saw. The emotional energy it took to deal with him made things even worse. I was in tears. I later got his file on me (for a lawsuit) and in it he said I was delusional, had pseudo medical knowledge and all sorts of other demeaning things. He was not AT ALL aware of any link between Cipro and nerve damage. I ended up sending him a couple articles on it from the Journal Neurology asking if he had ever heard of it.

Not only can and does cause tendon pain, that is saying it mildly. I had a 6″‘ rupture from Cipro, eight years ago. Not knowing about these antibiotics, and now I am in my 8 month after taking Levaquin and this month came the first relapse, after finally walking for the last three months, I could not for the past two weeks. It was a blow. It got me depressed, not knowing the future. But when I got to the point of accepting it, I did feel some peace and know I will do more to get better. Fortunately, 2 doctors understand.

hello. ive been in the same situations with many people here. Being sick and want to recover from this and just start living more. Im amazed how much you have accomplished and that you want to help others who are suffering. i have been struggling for about four months now and hoping to get better and im hoping with your assistance that i can get better too.

Helena, I completely understand your struggles and your desire to recover and regain your life. I am sorry to hear that you have had to endure this battle. There is hope, and I can certainly help guide you, support you and walk with you on your journey. I simply cannot wait for my new website to launch so I can reach out to more of us who have had our lives change overnight. Keep the hope my dear. Sending love.

Namaste. Pretty new floxie and going through really rough times (almost bed bound, terrible pains, can’t even walk and a whole long list of symptoms). It is just great to have someone from the medical community, and no less someone who can understand how these medications destroyed us, to be on our side. Really looking forward to read what you did to help yourself, help explain insights into how these drugs destroy nerves, muscles, bones, connective tissue, why doesn’t the damage stop and what not. There are many studies out there that do tell us how these drugs destroy us, but NO (with emphasis) studies out there to show how to reverse them or stop them. How can these drugs be permitted to be out there like this, when nobody knows how to reverse it or there are no antidote for it? Makes me wonder, if they haven’t even done research about how to reverse it? Most doctors haven’t even heard of these. No health professional has heard of what these drugs can do, including the pharmacist who dispensed it to me. Simply now clue. It is such a systemic failure at so many levels, and is just unbelievable. Its a massive public health disaster, hidden under the surface.
It will be vital to read what supplements you took to help yourself, and what are your insights. I think that you as well do one of the biggest favors to millions with your insight as you have a privileged position through your education to help the floxie community. Of course, we all are affected and damaged with these medications and yet everyone of us is also affected differently. Can’t wait to read your blog.

There is also a book you may want to read by the now deceased Dr Jay Cohen, who studied these drugs for decades (and addressed a member of congress, to no avail.) The title, sadly, says it all: “How We Can Halt the Cipro and Levaquin Catastrophe: The Worst MEdication Disaster in US History.” He give a number of suggestions, but alas he had no ‘cure” and many questions as we have. I get ill every time I see an ad for Bayer aspirin, or Dr Scholls , or other companies owned by them. THey spend so much on advertising and not one penny on fixing all its victims. And they have known for DECADES how toxic these drugs are. This link goes into detail on some of their corporate crimes including subjecting patients to known toxins in their trials. https://corporatewatch.org/company-profiles/bayer-ag-corporate-crimes#phailings

L
I’m pretty angry with these companies today. Why do they continue to market drugs that have serious adverse reactions if they know it. I feel this drug has tried to take over my life and I fight day for my health every day. And there’s nothing we can do–can’t sue since I took a generic and right now I don’t have the emotional energy to deal with these dishonest companies.

LOctober 23, 2017 at 9:19 am

They are despicable. They just don’t care. Their only motivation is greed. Bayer’s history goes all the way back to Nazi Germany, where they were part of IG Farben, and conducted chemical experiments at the camps. In fact the pharmaceutical industry was at one time the chemical industry. Rockefeller and his cronies knew if they could get the medical schools to teach only chemical treatments and not natural ones, they could make a fortune. So they gave large sums of money to medical schools with the caveat that they not only taught just chemical treatments, but called natural treatments and doctors “quackery,” which has sadly stuck through the years. Now Bayer wants to take over Monsanto…purveyor of the most toxic chemicals known to man, including: Pcbs, ddt, Roundup, rGBH, dioxin, agent orange, polystyrene, atomic bombs and nuclear weapons, and now GMOs

Singh, Thanks so much for your comment. It is appalling that medical professionals are unaware of this debilitating side effect profile. Sadly, it is not just with the Fluoroquinolones. I can tell you that at the height of my suffering, my pharmacist colleagues had no idea this type of thing could happen. I posted to my pharmacist friends that this is real and it does exist and to make sure they were aware of it as they were dispensing medications.

As far as what supplements to use, what treatment modalities to use, dietary changes, lifestyle changes, etc….it is important to remember that every one of us is different. As such, there is not a one size fits all protocol. I wish there was. However, with careful and thorough information and history gathering, I can personalize a plan for recovery. Many factors have to be considered, including health history, genetic predisposition to certain things, lifestyle, exposure to toxins, and believe it or not…some ethnic backgrounds have a greater propensity for certain side effects. There is a lot to consider when making recommendations. Reading some of the recommended books will help, of course. It also helps to have a health care practitioner be able to help recommend, guide, support and encourage you from a place of knowing rather than from a book. I will provide tips through my blogs, as well as other useful information. If you would like one on one guidance and recommendations, I encourage you to visit my website http://www.journeywithsujata.com and schedule a consultation (once the site is active) or reach out to me at my personal email at spatel@wellnesswithsujata.com. I have taken on several clients to start working with sooner than later…I hope to hear from you! You don’t have to live with chronic pain. You can have your life back. There is ALWAYS hope.

Sujata, thank you for sharing your backstory, and recovery, and for creating a space where floxxies can soon go for answers. I SO hope you will not charge the beaten-down and torn-up individuals for your helpful information; too many medical professionals do just that- dangle hope in front of desperate folk, then skin them for what little they have left… House payment monies, car payment monies, grocery monies… because the ONLY thing medical info is worth is the patient’s willingness to understand, assimilate, and implement/activate the information. For instance, perhaps you tell them which supplements to take, but they ALSO drink chemicalized tap water with their supplements, ingesting on average 6 to 8 poisons with every swallow of the supplements. MOST municipal water systems add 6 to 8 chemicals/ingredients to the tap water, to render it “drinkable”. That was just an example. Or they buy CLEAN water, to take their supplements with, but in plastic bottles, which ultimately deposits poisons into their systems. I am an RN, no longer able to practice, r/t Floxxed, who has been floxxed many times, but had no idea, because I was TOLD that the medications were safe, and they rarely, if ever, came from the pharmacy for a patient with the package insert included for me to read when I was administering them to others. And physicians never told me what the risks of Flouroquinolones were. I did not know until my own Mother was Floxxed this past Spring and it nearly killed her. Took her mind and body to new, and not-nice, places. She is slowly recovering. Sure, Sujata, charge SOMETHING for your private consultations, if you do it, but make it modest, please. I dealt with breast cancer during the last few years, and there is one “professional who charges over a thousand dollars for a mere PHONE consult! I obviously avoided her. I hope to see individuals helped, not hurt financially. Yes, people need to pay something for your time, and information, because if its free, they will think its worthless, and wont even try it. And Fellow Floxxies, please don’t take Sujata’s information she takes the time to put together for us, and then minimalize it by, say, buying her suggested supplements, then ordering burgers and fries that contain the massive amounts of synthetic hormones fed to the animals the meat came from, or run out and get a pizza with all the MSG in it…and eat it. -DONT, please. EAT well, Eat clean, organic GOD-food. The current fast-foods, even from a bag of a box to prepare at home are essentially harmful, containing poisons. Even the box surrounding your cereal contains bug and rodent repellents. IF you become a student of Sujata’s, FOLLOW all her instructions, because it takes a huge change in habits to clean our poisoned bodies out. BTW, my own doctor tells me also that Flouroquinolone toxicity is really rare, too. Their continuing education is pitiful. THAT is because of, ultimately, the government’s meddling in medicine. We must educate ourselves. But that is another discussion. I’m sure you know that, Sujata, but readers may not. Finally, my favorite physician used to say the solution to pollution is dilution. He was talking about drinking clean water. If you drink a large amount of clean water, say a half gallon of pure water a day, however, please make sure you are getting your electrolytes replaced in adequate amounts while you are drinking.

I really don’t think it’s wise to tell people not to eat what works best for them. This affects everyone differently, and it’s possible that people that have been very mildly floxed – like myself after a single dose – can still eat whatever they want. It’s the anxiety and PTSD of ingesting the Floroquinolone that contributes to inflammation and panic, as well. I am able to walk miles and miles and exercise moderately and do things normally (pretty much) throughout the day. I was floxed 19 days ago, and have taken every recommended supplement (like Magnesium Glycinate, CoQ10, etc.).

I was nervous as all hell after eating something processed a few days ago (one Levaquin 500mg tab). After coming to grips with the anxiety and knowing that I would be fine, I had some fast food, some chips, some pizza, etc. – and I was perfectly fine. Again, it affects everyone differently. So underlying symptoms such as anxiety could be a massive contributing factor, as well as this forum’s multitude of diverse stories, causing people unnecessary panic in what they eat.

I just got back from Taco Bell and it was sensational. Going to the extreme and telling people to eradicate everything they once enjoyed is terrible advice. This is an extremely, EXTREMELY individualized condition that affects some more than others. But it’s irresponsible to tell people what to do, when in reality, they should be listening to their own bodies. Not an internet forum.

Consider yourself extremely fortunate. Many (most) of us were dramatically damaged, many head to toe, and have suffered horrific, terrifying side effects. Damaged guy microbiome plays a huge role in much of the damage and it is critical to not only replace the good microbiome with prebiotic and probiotic foods but also to not exacerbate the situation with GMOs , gluten, processed foods and so on. Even people who have not been floxed would do well to avoid all that since damage gut microbiome has now been linked to cancer, Alzheimer’s, Parkinson’s, etc. so if you want to continue eating fast food do so at your own peril. You are kidding yourself. Again just be thankful you were not as damaged as most of us were.

MikeJune 16, 2019 at 3:01 pm

Becoming Floxed doesn’t mean completely changing your life. Yes, changes should be made acutely to accommodate healing. But everyone is different.

Lisa is a great example. She ate normally after a month. And the anxiety and fear of eating normal added to suffering.

I think it comes down to how badly one is Floxed. If it has completely and totally debilitated you where you can’t walk and are suffering horrendously, sure – I can see making drastic changes to promote extended healing.

For those that have been mildly Floxed, I think it’s important to remember that remaining as normal as possible is very important. Eat what you can tolerate. Acute changes are fine, but flipping your life upside down even more than it has been is asking for trouble with added anxiety and severe weight loss.

Dearest Paula, Thank you for your thoughtful comment to my story. I am saddened to hear that both you and your mother have been affected by fluoroquinolone toxicity and that the medical community has not served you well. You’ve provided a lot of insight as to clean food and water, which I couldn’t agree with more. I also agree that if someone is going to take the step to healing, it needs to be a fully committed process. Doing the tough work and making the necessary lifestyle changes saves lives. It gives us our lives back. No amount of comfort food could take the place of that, even when we are in the depths of despair over our changed lives. Also, I can assure you that I am fair and compassionate above everything else, when it comes to my consultations. I appreciate your input. Have you recovered from being floxed? And how is your mother doing?

Hi Sujata,
Thank you for your story. I live near a former pharmaceutical rep. who was poisoned by a FQ and now is a big advocate for the dangers of FQs. He no longer works in the profession for similar reasons. It’s sad that some people are forced out of their livelihood due to health-related reasons while others leave on a matter of principle. Regardless, for a few pills, it is sad nonetheless that people have to change their lives. I also found your story interesting because I had received my toxic dose in a hospital ER for diverticulitis. The pharmacist called to tell me that the flagy pills would taste terrible- and that was normal- but didn’t mention anything about the Cipro. When I indicated that I had read the insert- this was after about 4 doses already- she said the same thing: “That is only for people over 65. If you are in good health (which I was), you should be fine!” Within a few weeks, by body literally crashed. It was “All systems down!” and I have been trying to restore my health and it has cost me a fortune. It’s been a year this month and I am still far from “fine!” I have a doctorate degree and even a year later have difficulty with helping my 4th grader with math homework, following a recipe, word retrieval, etc. I was the “Queen of Multitasking” before but now I have trouble even following simple directions at times. My biggest challenges are the cognitive deficits, the ANS dysfunction, and the vision-related issues. My vision was wrecked by these pills. I have a curtain of floaters in each eye that are just maddening. Even when I try to put this behind me, psychologically, it is so difficult because I have a constant reminder all day of this experience. Can you tell me about the vision related issues you had and if they have resolved?

Ugh – I left a lengthy reply earlier regarding vision issues and it didn’t post. I’ll see if I can remember what I wrote!

First – I am sorry to hear of your struggles with this condition, and also the fact that a pharmacist told you that you would be fine.

I, too, used to be the AMAZING queen of multitasking, was quick at math, etc…when I was experiencing the height of my symptoms, as you know, I had to quit working because I could not make sense of numbers or words. I suffered immensely from the cognitive symptoms of this condition. I could not think of words, could barely remember what I was doing, I, several times, left the stove on under a pan with nothing in the pan. I very often would start something and then walk away for a moment and almost burn the house down. I had to come up with ways to remember, which was making a list. I always had a piece of paper next to me so if I thought of something or wanted to remind myself of what I was doing, I wrote it down.

As far as vision goes – I had blurry vision, massive headaches every single day. Light, TV, computers, reading….within ten minutes of any of those things, my eyes burned and hurt behind my eyeballs and immediately intensified the headache I had woken up with. I couldn’t read without readers or a magnifier or additional light…which of course, again, intensified my headache.

Psychologically it was devastating. I remember trying to research what I needed to heal myself while squinting in immense pain but suffering through it because I literally HAD to in order to save my own life.

Present day….I no longer use readers or magnifiers. For the past three months, I have been working A LOT on my new website. more research, etc which has been about 8 hours a day on the computer. No headaches. No blurry vision. No eye pain. Cognitively, I am smart again…I can think clearly, I can multitask – although not as well as I used to but who cares. We multitask far too much these days when we really should be focusing on what is in front of us. I view this part as a blessing.

I do know that with stress, the cognitive effects stand out more. So when we are maddened by not being able to do something we once were able to do, it causes more stress and more symptoms. I have found that by accepting where I am at any point, I don’t activate the stress response and therefor my body doesn’t suffer the consequences of it. I laugh off my inability to do advanced math anymore….or actually, simple math…and I laugh off when I cant find a word. I know that I have improved a thousand percent.

I noticed you asked a few questions below. I can share my story and my experiencing here on this blog, but I am reluctant to offer professional advise for medical histories I am not familiar with. I am sure you can understand that. It would be irresponsible of me to give my blanket stamp of approval on any therapy, which could be read and used by someone for whom it might not be appropriate.

My new website will be live soon, and I hope you’ll visit. I offer in depth consultations, which can be scheduled through the site. I not only address physical concerns but also the emotional unrest that comes with a devastating condition such as this.

I hope this gives you hope. I am 3 and a half years out….and feel amazing.

You are very lucky. My vision in one eye is considerably different than pre-Cipro. I had huge, vision blocking floaters—like looking through gauze for most of the first year. I also had dozens of little black specks in my vision, which I assume is just another type of floater. As you may know, it is suspected that they attack the vitreous gel just as other connective tissue.

For a good month or so I could barely make out a tv 4 feet in front of me. My vision came back some, but I was 20/25 before Cipro and about 20/65 now in that eye. I also was diagnosed, post Cipro with early stage macular degeneration and cataracts, both of which can be attributed to Cipro.

I had terrible light sensitivity to where I had to not only wear and hat and sunglasses, but for months had to hold something like a purse or book in front of my face. I continue to have light sensitivity but not to that extent. When I am out in the sun, it’s like a “shade” is pulled down over my right eye, and my vision is far from clear. I also am extremely sensitive to fluorescent lighting. Very difficult to be in stores.

I took NAC eyedrops 4x a day for a year. Not sure if that was what helped with the floaters diminishing (From 100% vision blocking, it is down now to about 10%) but I think perhaps it was.

TaraOctober 25, 2017 at 7:58 pm

L,
I’ve finished the first pack of NAC eye drops. It might be that the drops are breaking up and they seem like more right now. They have faded some. 10 months ago when they started it was like the attack of the crowd- very black and pronounced. The doctor I see said some of them could also be scotomas from damage to the occipital lobe. I had some neurocognitive and different assessments done two weeks ago and that was the first that I actually had proof of the functional toll this poison had on me. They’re the same tests I use in practice and could barely understand the directions. My reaction times were pitiful. He actually showed me on the computer how my eyes don’t work in sync and how the pupils actually pulsate. I cried for days after that, and I was so fatigued from the testing, but that was the push I needed to finally take a medical leave to focus on myself. I’m noticing some improvement on natural lighting but store lighting is hit or miss still- mostly miss, but the other day I was actually able to spend an hour grocery shopping. Can you describe your symptoms of light sensitivity so that I can compare? I also had this for the first time with the prednisone, which was the beginning of the nightmare- and if course I probably didn’t really need any of those drugs!

LOctober 25, 2017 at 8:40 pm

Well I was given cipro and prednisone at the same time which I am sure exacerbated thd reactions. The light sensitivity at first was actually painful. It was hard to go out side. Now when I do the vision in my right eye is almost like I am trying to look through a scarf. There is like a cloudy film over it in bright light. As for fluorescent lights it hard to describe. It feels uncomfortable and my vision isn’t clear. Similar to how it is on bright sun light. A bit different but not sure how to describe it. Cant wait to get out of the store. (Although it is much better than it was. Early on I literally could not stay in. I would turn around and wdlk back out immediately)

Thank you! It does. I just hit the year mark last week and that was tough. Each day I hope to wake up and feel totally restored, but I’d say I’m at about 50%, with better periods here and there. I tend to be an “all or nothing” person so celebrating little things is really challenging for me. I had to get prism glasses this summer because my eyes weren’t working together. I could not get out of bed without them. While thankful for them, if also serves as a reminder that I’m “damaged”. The floaters are unbareable! If I knew they would go away in time I could deal with it, but I worry about them being a permanent reminder. I look forward to your blog. I’m actually taking a medical leave to focus on my health right now. I’ve worked through the height of the symptoms, but feel this is a good time to stop being stubborn and take my 12 weeks of benefit time to relax and try some different therapies. I think I can benefit from PT and found a functional neurologist in my area who is also a chiropractor and he has a program that will address the ANS dysfunction. This will also allow me to do cleanses, relax, and do the IVs. Through sheer grit I was able to work full time and take care of my three young children. My husband works evenings so I’m by myself to get the kids to practices, etc. Some days it really is about just finding out how to use the parts that work. I think the stress of all that is limiting my ability to focus on the psychological aspect that really is holding me back.

I received the Cipro / Flagyl combo for diverticulitis but by iv so no leaflet! If I had had a leaflet I would have been alerted by the mild pain in my right Achilles tendon after about 24 hours and they might have stopped it. As it was I never made the connection and after 48 hours I felt really unwell with chest pain , tachy and pins and needles in my arms. Then they stopped the Cipro but never told me I was having a reaction to the drug and should not take this class of antibiotics again . I was 62 at the time and nobody asked whether I had had tendon problems before starting the iv. Since then the gastro consultant lied to me on the phone saying I had never had Cipro and falsified my treatment dossier when I asked for a copy saying I had had an Augmentin / Flagyl combo!. I don’t have the energy to pursue her.

OH Madge, that makes me furious. I had a neurologist who was the worst of the dozen doctors that threw me under the bus. I know in his records he said I was delusional and had pseudo medical knowledge (and at the time I saw him I was the walking dead—just a mess). I lost those papers and when I tried to get another copy of my file, he refused. (I think because a) he became aware I had a lawsuit going against the prescribing doctor/pharmacy) and b) I had since sent him articles from the journal neurology re Cipro. Anyhow, I tried by phone, by mail, in person and he would NOT give me my file. After the second in-person visit he had his attorney send me a letter threatening to have me arrested if I ever went to his office again! (Likely because after the last visit, as I was leaving, empty-handed, I turned toward a couple in the waiting room and said “run for your lives!” 🙂 )

Madge hirschOctober 29, 2017 at 1:20 pm

At least you had that small satisfaction! The worst thing about the bitch gastro was that she said zilch about my reaction and them stopping it in her follow up letter to my GP. A copy of that was in the dossier. If she had I am sure he would never have prescribed it a year later for a suspected UTI. At least the first pill gave me a visual disturbance that I recognised from the hospital and I looked it up online and finally found out about floxing. I am so thankful I stopped with that one pill. I thought I had escaped apart from mild Achilles tendon pain again but no. One week later I was rushed to hospital in an ambulance with a serious arrythmia. I suspect the one pill had severely depleted my magnesium as I was not taking supplements then.

LOctober 29, 2017 at 2:09 pm

I only had 4 pills and ended up just body-wide devastation. BUT I later learned that I had indeed taken both Cipro and Levaquin in the past, so I think I reached my “threshold.” (and I was given prednisone at the same time AND was already on inhaled steroids…..What really pisses me off (well among pretty much everything involved here) is I noticed several things after ONE pill—I woke up with blurred vision, floaters and number fingers and unfortunately thought I just slept funny and had some weird nerve thing going on. I ended up taking three more before I found all the floxing info. I wonder if my nightmare would have been as bad had I just had the one this time.

It’s hard to say, L. My nightmare started a few weeks after I finished the last of the prescription. I thought I was in the clear because I happened to find out the potential side effects AFTER I took the majority of the prescription. I googled it and was horrified with what I saw on the internet. I didn’t finish the last two days worth. I prayed and prayed I would escape it. The family medicine doctor who I saw actually asked me how I felt after that combo. during my follow-up appointment for the diverticulitis. I attributed the probable side effects at that time to the diverticulitis and not the medication. Ironically, when I did fall apart a few weeks later, she had “no idea” of the terrible side effects of the medication. It just HAD to be something else- as I was covered in a red rash and itching like crazy right in front of her as I shuffled into the office and felt like a vampire because of the bright lights… yeah- couldn’t be the Cipro because people just naturally fall apart overnight! I took the medication in October and the dark floaters didn’t emerge until about 3 months later. Now, they are lighter, but there seems to be more of them. I got my second round of eye drops over the weekend. I’m not sure if they help with the floaters, but they do provide some comfort for the dry eye. I thought of you over the weekend. I was having a rough couple of weeks, cognitively. I used to love Sudoku puzzles. I tried to do one last week and I had NO idea how to even start it. It confused my brain so much- I cried. Today, I can do it. Maybe it was a detox day because I started taking Boron again… Anyway, I bought a word search book to try to keep my mind occupied at night. I love doing all kinds of puzzles, so I’m trying to do those again, as I’m able.

LOctober 30, 2017 at 1:37 pm

Tara, I had a reverse path as you. I got the floaters, black spots, blurred vision, diminished vision THE NEXT DAY after the first pill and it just got worse and worse. On the other hand, I got rashes about months into it. All over my torso and thighs. That went on for about a month. It is still just so astounding to me how uninformed doctors are on this. Even in spite of the FDA’s fluoroquinolone associated disability designation, that clearly states it can effet multiple systems. The problem is the FDA doesn’t emails these warnings and the doctors get their info from sales reps. And in med school they are taught the glories of drugs. It is just absurd that after I was injured ONE DOZEN doctors of assorted specialties were completely ignorant of ANY of the side effects, much less the fact that I went from someone in incredible shape to a blurry-eyed, shuffling, underweight, pain-ridden, gasping, suicidal shell of my former self….

Glad you found some puzzles. One thing I can’t blame on the Cipro—not being able to do soduko! I do though do crossword puzzles. Interesting, I picked up a “rag” in the magazine aisle one day to have something to read and it was cheap. Well, it turns out (can’t recall the name of it now) it has BETTER info on health and supplements and natural treatments than popular magazines. I was pleasantly surprised and I pick one up now and then—and it has a crossword puzzle. In fact, I used to get Real SImple and O magazine and stopped both. Too many drug ads. Too much old school medical advice re flu vaccine and taking pharmaceuticals for whatever ails you. (and of course I let them know WHY I canceled.)

TaraOctober 31, 2017 at 6:21 am

L-
You are preaching to the choir with the info. about doctors! Plus, the healthcare system I was in lets the residents run rampant with very little supervision. They are so happy to have the pen to write prescriptions that they just continue to over prescribe. I remember asking the “doctor” if he can just write me a note for bed rest for the diverticulitis since it was a “mild case” and he looked at me very oddly with a snicker like I was crazy said that he could give me a note for a day off, but that I needed to take the medication to get rid of it and not just rest would do it. Studies from other countries emphasize that bedrest and dietary modifications can be enough in most cases of mild diverticulitis. We overdo it and undervalue our innate ability to heal. We are so programmed by Big Pharma that we need a drug for this or that and prevention, etc. I live in PA around a number of Amish and Mennonite communities who do not use traditional medicine and they are some of the healthiest people I see. It is not unusual to pick up the paper and see that someone from one of those communities lived well into their 90s or longer.

Re: Magazines- I feel the same way now! I stopped reading magazines- 1) Because my vision system/nervous system couldn’t tolerate them and 2) Because they were nothing but ads. I do the same thing with Yahoo email when I block an ad and they ask why. I tell them to stop promoting Big Pharma.

I forget if you said the blurry vision went away… I know your acuity is less, post Cipro, but did the blurriness cease?

LOctober 31, 2017 at 9:48 am

Tara—yeah I love the way they look at you if you DARE mention or suggest a non-pharmaceutical option. I am so done with regular allopaths. It’s like UTIs (for which I have experienced this nightmare.) I cured one post Cipro with a regimen from an ND—NO drugs. But if you go to a regular gyno they try to instill the fear of kidney damage in you if you don’t take pharmaceuticals.

Yes, the blurriness went away. The floaters were so bad at one point it was hard to distinguish between the two. But what I am left with now is worse vision, and some floaters although not as bad as before, and the ocassional little “black spot floater.” Well, that and I was told I have early stage macular degeneration now and early cataracts. I was told to take AREDS 2 by bauch and lomb—but I want nothing to do with typical drug company stuff, so I take something by Bluebonnet which includes everything the AREDs formula has AND other supplemental stuff like bilberry, NAC and more. I also take an additional 10 mg lutein.

Funny you should mention the Amish. I was thinking about that very thing not too long ago…about how they are probably so much healthier than the average American.

Madge hirschNovember 2, 2017 at 2:22 am

I have a vitreous detatchment in my right eye which did not happen till 7 months after one pill. It is like having a twiggy branch with a few blobs round it . I have got used to it and I think it has broken up a bit. I doubt it will disappear altogether. I aso have blurred vision in the mornings but this clears with a lot of blinking and comes and goes. This came after previous floxings.

I was to have the IVs, and actually opted for it instead of the pills, but the doctor- who never saw me in the ER- only saw the resident- indicated that it was not necessary to stay because I had a “mild, uncomplicated case” that did not require IVs… so, instead, we’ll just give her two last line defense drugs instead and ruin her life… anyway, I think the only silver lining to this situation for me was that the IVs would have probably killed me.

Please remember everyone is different. Everyone has a different level of toxicity, exposure, sensitivities. Everyone has a different genetic makeup which impacts elimination pathways. There really is not a one size fits all recommendation.

I had been detoxing and healing for a year and 3 months before I started the IR sauna. I had also completed an ayurvedic detox program about a month prior to the IR sauna. For those reasons, many of the toxins in my body were already mobilized and released by the time I started using the sauna.

I started at 30 minutes three times a week with lots of hydration, and increased as tolerated. As far as temperature – my sauna goes up to 150 degrees. I would get in when it was 100 degrees and set the timer. Typically, by the time I was done, it was at about 130 degrees.

Glutathione has many benefits. You can get it via iv or you can get it by supplying your body with the precursors necessary to make it within your body. My preference for me is this as opposed to iv, because it is non invasive and less costly.

TaraOctober 25, 2017 at 7:25 pm

I’ve done 7 IVs so far and found them helpful. I was getting to the point of not being able to walk, but after the IVs, I was able to continue working. I haven’t done them in 7 months but I might return. They are expensive but if I can restore my health, they are a small price to pay. I saw where some people expressed concern about floxed people getting glutathione so just wanted your take as a pharmacist.

LOctober 25, 2017 at 7:31 pm

I am going to add my 2 cents two. I started on glutathione with the second iv I got. It has now been recommended to me by two naturopaths, an holistic dentist and an integrative internist. (I have over the last 2 1/2 years gotten 93 IVs. Some were to help me wean off asthma meds since they contain fluoride and steroids) and 40 were for phosphatidylcholine, and that was the recommended number. I feel like they gave my life back to me, even though I have some remaining issues. Yes, it is expensive. I was looking for work at the time I was hit. I went into debt, maxxed out my credit cards…but I thought “what’s the alternative?”

Thanks! I agree! I just wish Bayer or the doctors responsible for my sudden demise would be footing the bill so that I can save my money for things I planned on- like my mortgage or my kids’ college fund… and don’t get me started on the fact that I have awesome insurance that hasn’t covered much of anything related to being poisoned. In fact, I mostly paid my co-pays to be insulted!

Question re: the “blurry vision” for all who has had it… Can you please describe it? For me, it is like it is blurry in my visual tract and not necessary my eyes. It’s a weird feeling to describe. It’s certainly blurry, but like I’m in a fog or haze around me and not necessarily like blurry vision like when your eyes just need to adjust; although, I probably have that as well.I have about 10 things wrong with my eyes. I’m surprised they didn’t fall out! (Knock on wood!)

Also, for those with light sensitivity in the stores with fluorescent lights- Again, I wouldn’t say it is really all about my eyes, but more about how my brain responds to the lighting. I think it might be due to insufficient GABA, because I used to have panic attacks and no longer do to that extent, but my head will still feel hot and my vision gets funky within the first 5 minutes of being in the light. It’s like my brain can’t protect me from the assault of all the store lights. I understand what you say about the “shade” being pulled over my right eye. It’s like some visual pathway darkens or something in response to the intense light. I get a wierd type of headache and don’t feel quite right for awhile after I leave the store. It’s just like nothing I’ve ever experienced, but that started with the steroids and continued past the Cipro. It has gotten better, but still present. I hope to be able to return to my days of being able to do “retail therapy” and “grocery store” therapy. I’d love to just meander through the stores. It was so relaxing, even if I never bought anything.

you know tara, it is quite possible what you are experiencing is ocular nerve damage. My blurriness I think was directly related to the eye itself, BUT as I mentioned before I had olfactory nerve damage, making everything asphyxiating, and I believe my tinnitus is from aural nerve damage. In fact, the biggest percentage of my damage was nerve damage. (I still have numb toes, a couple fingers that don’t operate correctly. I also think the pelvic area pressure/pain is related to nerve damage. The strangling sensation around my neck I believe is nerve damage. Even my gasping for breath, although one specialist believes it was from mitochondrial damage to the heart muscle, I wouldn’t rule out autonomic nerve damage.) So it is quite possibly nerve related.

I do think it is related to nerve damage within the ANS some place or the optic nerve itself- which scares me. This is what is so maddening because the prognosis is so uncertain and treatment is so nebulous because no one really knows what is going on, let alone how to treat it. The right side of my body seems to have sustained the most damage, but the visual system actually crosses pathways in the brain, so it’s hard to say for sure. Really, the sad thing is that it really is a “wait and see” game. I just hope the worst of it is behind me and it’s just healing from here on out. Would you still say you are about 95% recovered?

Yes Tara I would put me at about 95 percent. Some I doubt will ever go away like the numb toes or my new level of vision. Also found out this week that o still have fluid around my heart and that it’s likely permanent. The rest of the stuff that comes and goes like phantom smells I can deal with and suspect they may eventually go away. I wish I could do something about thd tinnitus though. I never get silence anymore. Just. Constant hum/buzz/hiss sound

L,
I’m sad about my Vision issues… It’s like an invisible Scarlet letter…Constant reminder of being tortured by this poison. It’s like it will always get the last laugh as long as these floaters persist. I was getting my hair cut a few hours ago and I could just see nothing but floaters swimming around in my vision under his shop lighting. If it weren’t so risky to remove the vitreous gel and replace it with water, I’d do it in a heartbeat! Have you been able to work? I go to the eye doctor next month for an internal eye exam so I will see if anything shows up. I see someone different for the prism glasses and she hasn’t done an internal eye exam yet, so I’ll see if he can see anything on his exam. I’ll keep using the eye drops to see if that helps at all. Like I said, maybe they are actually breaking up and that’s why I seem to see more than usual lately. There’s not much I can do about them…

How did you manage to support yourself through this ordeal? I just had a rough few weeks and minus the floaters, today was decent. I could think clearer and even multitask. I had to pick up Halloween costumes for the kids between work and getting my hair done and I think my nervous system could actually support me being in a rush instead of feeling like I was dizzy and my brain was about to crash and my eyes would cross and I would fall over. I had some minor discomfort in the store but tolerated the lighting ok.

LOctober 26, 2017 at 5:56 pm

yeah, the vision issues cause me the most sadness too. I had clear 20/25 vision in the eye that is now 20/65. The floaters got much much better …I mean initially they worse so huge it was looking through gauze 24/7. And the little black dots were awful. I kept thinking there were bugs in my periphery, and at it’s worst I remember shuffling into a Costco with someone to pick up my sleeping pills, and the white tile floor was literally COVERED in black spots. I was so depressed. I felt like I had double pneumonia, I was gasping for breath, I could barely walk and then to have all the eye stuff on top of it…I just could not stop crying.

I get a single ocassional black spot now (again, I think they are a form of floater) and the big floaters I still get but compared to how I was, it’s SO much better. The decreased visual acuity is likely permanent —and another problem I have is that my allergies are so awful I constantly have stuff in my eyes. I either have the tip of a Kleenex or my finger in my eye at some point every hour of the day. I also rarely used reading glasses before this happened and now I have them on most of the day. I remember the good old days, when I never spent one moment of the day thinking about my eyes. Now I think about them all day.

AS for how I supported myself—I maxxed out all my credit cards, got some help from friends and someone set up a go fund me account. I have worked a little —part time, temporary things. I was trained as a paralegal but had such a horrible experience fighting my own medical malpractice case, that I have lost faith in the legal system, so likely won’t do that again. The most exciting thing is I will be acting again soon, something I was afraid I would not be able to do again.

TaraOctober 26, 2017 at 7:50 pm

It helps to talk to someone about the vision issues who has/is experiencing them because I still cry every day at a year out about my vision. Most other things I can live with at this point in time. I still have cycling of different neuropathies of various kind and significant word retrieval issues, but I could deal with them if this is the worst it gets. My fingers and feet were numb yesterday but today they are OK. I still feel “locked” in terms of positive emotions and my personality, but I think part of that is from the trauma of this experience. My vision is always on my mind. I never thought about my vision or many things related to this experience- partly because I have never felt things in my brain or body like this to know they even existed! I never even had a problematic headache before these medications! I feel like I was electrocuted and turned inside out! Right before I got floxed my husband and I had to bring a legal claim against a company that installed our hardwood flooring incorrectly. They were clearly in the wrong, but I learned a lot about the legal system and how if protects the guilty more than the innocent. Our attorney was useless. It took two years and cost almost as much as the flooring. I also cry because even though I would love to sue someone over this catastrophe, after my experience with the legal beagles, I think that would be equally traumatizing with all their loopholes, etc. I keep wondering how people can sue for talc powder and hot coffee and get a million dollars, and my eyes were probably permanently damaged and I more than likely won’t ever see a dime!

LOctober 26, 2017 at 9:11 pm

wow–your neuropathy went away? My toes are as numb as the first day, more than 2 1/2 years ago. Dont’ think there’s much help there. I DO think the NAC drops helped, but you have to be vigilant…4x day for a year. But again, the difference between the floaters then and now is huge.

I used to love those little puzzles where there would be two different photos that looked identical, but there would be small differences you had to find. I could spend hours looking at them. Can’t do it anymore…my vision is not good enough and it focuses me on how bad my eyes are now. I also like to read to help me go to sleep, but I have trouble doing that now too.

RE a lawsuit, if you did sue, you need to make sure you are within the statute of limitations. If you even suspect you might want to, you need to find that out and file the complaint right away (hopefully with an attorney.) I assume you took a generic, so can’t go after the mfr. That leaves the doctor and the pharmacy. I would have never encourage people to file lawsuits before, but this is different. First, our treatments are mostly not covered by insurance. Second, side effects can be long term and new ones can occur later (esp tendon ruptures) 3) I think it is the only language they understand. As for the floor, sounds like you did not have a very good attorney. Sorry about that. Sadly, worse than that, is the fact that lying, hiding documents, etc seems to be the norm now. More about game playing than a search for justice.

A friend of mine had double vision issues after an accident. She went to a doctor who specializes in eye exercises and he helped her get rid of the double vision. I am wondering if perhaps there is someone like that who can help you with what may be nerve damage issues.

took me 2.5 years fot thinitis to reduce life was good for a year or more and then peri menupause hit but i also had cytomegallo virus active infection, so i dont know if the crash is from post viral fatique syndrome or peri as my hormones test still okay but they say you cant trust the tests for peri symptoms. look up peri symtoms there are 40!! anxiety depression the most misarible ones. english second language, my kid had viral meningitis 3 weeks better but not himself my heart is shattered, he has a pulse in the 80’s. Im on ativan few months nowafter i promised myself to nver touch it again. but it helped me first 7 months post mefloquine could not sleep 1 minute, had constant brain zapps etc, still sensitive eyes blurry sometimes still, but had a good year and then crashed peri or viral damage. ativan again like the fist year after mefloquine damaged me, the sister medication of FQ’s, otherwise cant breath want to die. no anti depress is working nothing natural will see if i can get a naturapath here in south africa, fed up of spending money. i receive ozone iv therapy 2 months now helps a little cant really say, cant take supplements never could and too scare to remove mercury out of mouth.homeopathic stuff did nothing cant really say. also on 3 drops med cannibis helps just a little with sleep cant go up pure cbd oil without thc did nothing for me. but my child must get better i have double stress on me now, i hope he doesnt develop an anxiety disorder

Thanks, L.
You mentioned a lawsuit before. Did you file with an attorney or try to do it alone? I know you said it was very difficult to do and very taxing, personally. I am actually taking a medical leave at work to try a neuro rehab program. My whole nervous system was impacted by this experience so I am going to try a program that focuses on rehab exercises for several hours a day and eye exercises are a part of that… of course it is probably not covered by insurance, but what is, really? I was reluctant to bring a lawsuit before because, as you know, it is difficult to medically document the fallout when not a lot shows up on tests, and the doctors make you seem like you are crazy. I’ve had a few who believed me, but still crafted their documentation to make it look like it could be other reasons- age, etc. I recently had a bunch of assessments for that rehab program and it is clearly documented that I have a lot of neurological issues, particularly with the ANS dysfunction. My pressure rose 30 points when I stood up, which is indicative of POTS, which I never had before. I guess it wouldn’t hurt to at least consult an attorney. It is hard to find a good one, though. It seems it has to be advantageous for them in some way. I will continue with the eye drops 4x/day to see if that helps with anything. I am waiting for the second box to arrive in the mail, so I’m currently out. The neuropathy in my hands and feet comes and goes. I am always preoccupied with what is left to come after taking these pills, like what could show up in the next few months to years that might never have showed up if it weren’t for this poison. Sometimes ignorance is bliss.

Thanks, Deb:
I had taken a few weeks offline because I felt I was getting too consumed with it, again, and it wasn’t good for my morale/psyche. I go in spurts where it is immensely helpful to be connected to others who understand and then it’s not so helpful at times because I get “stuck” on how terrible this experience has been for me and I start to worry about my future again and the “what ifs.” Even when I start to regain some physical aspect of my life again, it’s like the psychological piece rears up even harder then. Even if I could consider myself marginally “healed” physically from this experience (minus the vision issues), I still have a ways to go with the psychological aspect of this experience. As you know, it’s like you’re always waiting for the next thing to hit. Even when I have a few better days in a row, there’s still something that keeps me from feeling like my “old self” psychologically. I never wanted a “new normal”- I was just fine the way I was and my imperfections could be laughed at and not cause me anxiety like they do now. I have a hard time separating what is a “normal” thing to happen (like if I forget a word) versus what is still fallout from this experience (I had difficulty with word retrieval). Even in bright light, I still panic because I was so light sensitive for a long time. I probably was before because I’m fair with blond hair and blue eyes, but it never caused a panic response like it does now.

I hit the “year mark” this month. I’m thankful to be alive and to have made as much progress as I’ve made. I’ve still been able to work; although, I’m taking a LOA soon to focus on vision therapy and other neuro. rehab for the ANS dysfunction. I am not the most patient person and if there is something that I can be doing to support the healing process, I will try it. I do notice that when I seem to have rough periods (i.e., the last three weeks), I seem to be stronger after them. Last night I was able to do several things in a hurried manner for a few hours whereas just a few weeks ago, I was still at the point where I could only handle one thing at a time and for not very long before becoming dizzy and feeling like I could fall over, so it’s a slow go. My daughter had to dress as a scarecrow for school today for her party, so I was throwing together a costume that required a fair amount of detail. I would not have been able to do that last week, but I could last night. I was not able to put her hair in pony tails for a long time (due to eye focusing issues, nervous system issues), and this morning I could even braid her pigtails, so it’s the little things like that where I feel like I’m coming out the other side…slowly… I’m just ready for it to all go away.

Hi Tara,
I have some days where I feel better. There aren’t a lot yet. I had a great Tuesday where I felt like I was healing. I don’t have many of those days. But I still have all the symptoms. But some days the symptoms are less. And on those days when I feel better physically, I feel better psychologically–like I really will get through this health crisis. Truly feeling hopeful helps a lot. Having support helps too. But I think people can’t understand how adverse effects from an antibiotic can last so long. I would think the same thing if I hadn’t been through it.

The shaking does seem to be better. I still have some muscle weakness and the head pressure. I went to the neurologist with the head pressure, etc. and he didn’t have much to say about it. He said he didn’t know much about Levaquin toxicity. All I’ve heard from the doctors I’ve been too is they don’t know anything about Levaquin toxicity. So that’s a waste of time to mention it. I have to watch the supplements–some can cause the anxiety. I have done a couple of acupuncture sessions, and I don’t know yet if it’s helping or not. I thought it was after the first one. I think I need to give it more of a chance.

More power to you for a lawsuit. I don’t understand why the drug companies can continue to dispense the medicines when they can be extremely damaging to some.

Part of this battle is mental and I work on that, but it’s a tough battle too. I do the thought changing and replace negative with positive, and I pray a lot.

I’m so ready for it to be over too and get back to feeling good. It does seem like you are making a good bit of progress. Maybe your LOA will help a lot. I think we are both alike in that we want to be 100% better.

Yes, Dee- an equally challenging part to this process is the dismissal from doctors. The neurologists I saw were the worst! By that time I had worked my way up from “Anxiety Disorder” to “possible Conversion Disorder in the absence of physical findings…” in their notes following their assessments because most of the doctors I saw by that time were all in the same healthcare system. They just read each others’ notes and formed the opinion that I was this hypochondriac because nothing showed up on bloodwork and because I was reporting this (Very real to me) bizarre symptoms that only exist in the “1%” of the people who have this type of reaction… I still think there is no excuse. All you have to do is google the topic and look at the wealth of information that comes up!

Hey Tara,
And not to feel well most days just gets scary. If I were 100% certain that I would get well that would help immensely. When I’m thinking positively I try to tell myself that stress isn’t helping my immune system. However, sometimes I can’t determine the thought that is discouraging me–I just know I’m discouraged.

I don’t understand how doctors don’t know about it. It is being reported in widely read publications. Maybe doctors do know and can’t rationalize that they are prescribing medicine that could cause so much harm. I would like to know the true number of people who are adversely affected. I think it is more than 1%, but I don’t know. Some people may not even know their symptoms are from FQ toxicity if there was a delayed reaction.

I’m not working today and I really need to get my mine on something else.

Have a good day!

helenaOctober 27, 2017 at 11:33 am

Deb hope you are feeling better and just relaxing since its your day off! Im still struggling with symptoms and just want to get better along with everyone else!
Tara~ im glad you are getting better and hope your vision gets better!

TaraOctober 27, 2017 at 1:14 pm

Deb,
It sounds like you are still able to work. I would be in a much darker place if I were not able to work right now. I’m electing to take a LOA, but I don’t know if the therapies will help or if I’m just chasing a wild dream and need to just realize that time is the only healer, really. I don’t know if taking a leave earlier would have helped my physical healing, but I don’t think it would have helped my mental healing for sure. This thing is like chasing an invisible Pac-man in your body and you have no clue what exactly is happening, you just know you are not the same person and feel a bit sci-fi like! Things that my nervous system was capable of doing and places my mind went to were beyond even my wildest dreams or comprehension! I stare at a pill and think how a few of these can cause something to go so wild for so long! Yes, if I knew I would be 100% better with everything I lost within two years, I think I could change my outlook. I fear for any “hidden” things that might show up down the road. I also worry about the permanent floaters always being in my line of sight. They had been getting better, but now there seems like more of them. I was actually listening to a radio talk show this afternoon on my way back to work from volunteering at my daughter’s class party about new inventions that target DNA and mitochondria dysfunction/mutations and I was just thinking about how it relates to FQ toxicity. It sounded encouraging, in terms of the body having the ability to self-correct damage with time. On a positive note, I have been able to watch a few TV programs recently- the first in over a year! The fluorescent lights in my daughter’s school were a little much at times- I was there twice today- first for 1st grade lunch and then to volunteer in the classroom. It is way better than what it was, but my nervous system still feels somewhat activated and I feel kind of “dumb” and neurologically incapacitated at times under the lights, but I was able to watch the two cartoons and look at my cell phone without much difficulty. I can only hope that by this time next year, I will have a better outlook and be almost back to completion again.

Hi Sujata! Amazing story and so happy you are recovered!! I am currently going into my 5th month of recovery and of course working through the maze of supplements to deal with this recovery!! My GABA receptors were hit hard so my most challenging issues are brain fog, anxiety, inner tension, severe tinnutus that was brought on by this poison and really bad insomnia!! I have some peripheral neuropathy but my main concern is healing my nervous system which I pray will heal in time! I read on another post about taking glutathione which I am taking acetyl glutathione pills and you suggested taking precursors along with the glutathione. What suggestions do you have for precursors and what dose etc did you feel was best? I don’t want to get the IVs as I have heard for some people they can be harmful do font want to take that risk! Did you have insomnia and CNS issues?? I would really appreciate some suggestions on those precursors. Blessings to you for helping all of us suffering with this nightmare!

wellness….when you say you are recovered, does that include the tinnitus? It is one of my half-dozen of so remaining side effects and is driving me insane. what did you do for that?

so funny to read your post just after seeing a post on facebook …a piece on George takai’s site where medical professionals mock those who research their treatments online instead of trusting their doctor….grrrrrrrrrrrrrrrr of course I let loose a diatribe

DebOctober 27, 2017 at 10:50 am

L
I wouldn’t have any information if I hadn’t come to this site. My doctor is the one who go me into this health crisis.

LOctober 27, 2017 at 11:49 am

me too….and the next 11 I saw after him…all touting Cipro’s greatness and how it couldn’t possibly have caused all this. nothing like adding to the stress you already have, by not being believed by the doctors you go to.

TaraOctober 28, 2017 at 10:06 am

L,
Did your vision fluctuate a lot during the first year or so? Today is a “gauze” type day and some days it’s a lot clearer. I just started taking tri-boron so I don’t know if it’s a detox type effect or not. I had taken it before and stopped because things had ramped up considerably but that was about 6 months ago. Also, did you have word retrieval issues and feeling like your executive functioning was compromised? I can just stare at something sometimes and know what I want to do, but just can’t seem to execute it.

LOctober 28, 2017 at 10:21 am

Tara, during the first year there was no fluctuation. IT was bad EVERY day, so I think that is a good sign for you! I was convinced I would spend the rest of my life “looking through gauze.”

And yeah, I had major cognitive issues and trouble remember things. I thought if I was ever able to act again, strength wise (and deal with stage lighting) I didn’t think I would ever be able to memorize a script again. Gotta say, it still seems more difficult that before, but definitely do-able.

L, Tinnitus seems resolved for the most part – every now and then I might notice it, but nothing significant. I can’t say I did one particular thing for it. It’s the whole treatment approach – whole body- rather than targeted symptoms for that particular piece.

LOctober 29, 2017 at 9:44 am

well I am afraid mine is permanent. I had head to toe nerve damage and I believe this is more nerve-damage. While I am 90-some percent recovered from the dozens of other side effects, the tinnitus only seems to get worse and I am 2 years and 8 months out…

Sujata,
It sounds like most of the therapies you did focus on a detox protocol. Are you of the opinion that FQ stay in the body? I tend to lean that way because everytime I do a detox therapy, the symptoms seem to return in full force for a period of time. I’m exactly a year out.

Detox is very important because of the bonds the chemical structures of FQ create within the body, leading to less elasticity in the tendons and all the damage they create within the cells of the body. Getting he poisons out of your body is one of the steps to recovery. Next is creating an optimal environment for healing and then providing the body with the necessary things to heal itself. And then of course – preventing exposures to “like” chemicals that could cause similar destruction. It’s so dependent on lifestyle – how people live, and what they are willing to commit to, as well as diligence in the therapies.

Many people will look online and try one thing or another based on what they read. It’s important to understand the connection between everything so you can, like I said, create an environment optimal to healing and preventing future damage.

As far as detox goes – yes – as long as the poison is in your body, or even remnants – it’s very difficult to fully heal.

Sujata, I actually grew up in the Bay Area (Oakland/Alameda) and now live in the Central Valley of CA. I would really like to talk with you! Is it possible that we could talk over the phone? I will give you my email address and you can let me know if we can arrange a conversation? I am currently starting into my 5th month of recovery. I have several questions I would like to ask you. Let me know through my email if that can be arranged! Thank you so much
Dee. deegilmore75@yahoo.com

I have been dealing with this since January of 2015 and it has been a daily struggle. I was 22 at the time and had a once very active lifestyle. At this point I deal more with fatigue and muscle weakness, but in the beginning I had alot of nurological pain, brain fog, and tendon pain. What has helped you the most with getting your strength back? I have tried almost everything I feel like at this point.

Hw, It has been a very involved and individual process of creating the optimal environment within my body for healing and recovery. I am sure it feels like you have tried almost everything at this point. I have encountered many people who have felt the same way. Sometimes it’s just finding those final pieces to the puzzle that makes all the difference. I am certain I can be helpful to helping you regain your vibrant life. You are young. While my website is the easiest way to learn more and schedule a consultation, it is not live yet. If you would like, please email me at info@journeywithsujata.com and I can help move you in the right direction.

L,
Do you remember how long it was until your blurred vision went away? Was it after a year? I took my kids trick-or-treating last night and I could really tell my night vision was a lot different than pre-Cipro. I do know that I have a lot of ANS dysfunction, so some of it is probably related to pupil dilation. I was able to walk with them around several different neighborhoods, but I was somewhat dizzy at times and felt my vision getting wonky in different ways at times. I persevered, determined not to let everything interfere with my children having a good time, but it was a struggle compared to last year, which was right after I took the Cipro and just started having some side effects from it… and of course, I was still spinning from the steroids at that time and my GI system was healing from the diverticulitis…All of my health issues can be linked to Big Pharma these past two years, as I had 0 health issues prior. The floaters and visual snow are terrible today. It’s like they are out in masses. I think I have a mixture of scotomas and floaters. I also take Lutein daily and I can tell that this has helped with taking the edge off the brightness of the computer and cell phone screen for me. I use the Can-C drops. It’s been about 4 months for those.

It’s hard for me to recall exactly, but I think the blurriness itself (and again the floaters were SO bad—so many, so large that sometime it was hard to tell which was which) lasted around 6 or 7 months.

IT’s weird because (either the floaters or nerve damage) make it difficult being in bright light, which I have mentioned. It’s mostly just one eye, but it is like a shade is pulled down over it. I am attaching a link that hopefully will open of an image I found that is pretty close to what it looks like to me. BUT I also do not see as clearly when it is overcast outside. There is a kind of sweet spot for me where the sun is out and it is clear but not really sunny or really bright—and then I see the same out of both eyes.

That’s how mine is without my glasses now. It’s just like a dull haze and the colors aren’t vibrant. It was so long ago that I had nearsightedness and astigmatism so I don’t really remember what it was like. I couldn’t see a thing without my glasses, but then I didn’t have the visual snow and floaters to contend with either. Somehow, I don’t think it’s as easy as a “redo” of the LASIK to correct the problem. I think it’s nerve damage and probably at several places within my visual tract… or it’s mitochondrial related. When my eyes are tired or when I am stressed, the floaters are more prominent. When I was losing my vision, the eye doctor told me the LASIK flap was “perfect…” It’s been about 6 months and my follow up is next month, so I’ll see if anything shows up on the exam. This isn’t the same eye doctor who does the prism glasses. She has not done an internal eye exam. The picture that you showed me reminds me of how my right eye would get when I went into a store with fluorescent lighting, before I had my glasses. It was like it was on a “dimmer” switch. That has since lessened. I still hope to one day wake up with perfect vision again, but I am starting to think that is a hopeless cause. I should just keep praying to retain what vision I have left! I am going for the eye exercises next week, but that might be another “wishful” thinking venture where I deposit a large sum of money to wind up worse off than before. Is there a point in time where you started to really “turn the corner” and feel like you were making a lot of progress? A lot of the terrifying neurological things stopped- like being electrocuted and having a (literally) hot head… but I just feel so fatigued, cognitively impaired, of course the vision issues, and just like I’ve totally lost a sense of who I am… I can go through the motions each day, with some brief periods (maybe a day or two) of reprieve, but then it cycles around again and I feel like I’m back at the beginning of being Floxed. I think I’m still trying to come to terms with being poisoned, too… which doesn’t help.

you know I had had RK about 20 years ago…a precursor to the lazik. Prior to that my near-sightedness was so bad I didn’t even go the bathroom without my glasses. But after the RD–wow! great vision, 20/20 in one eye and 20/25 in the other. Rarely used reading glasses. OF course Cipro destroyed all that. It’s hard to recall re “turning the corner” because things started falling away or at least improving one at a time, and I had over 30 side effects. Sometimes I wouldn’t realize it except in retrospect, like “oh wow, my rashes are gone,” or “hey, I haven’t had that excruciating back pain for a few days now.” As awful as fluorescent lighting was/is I actually took a part time holiday job at a store last Christmas and while the lights bugged me it is something that I could NOT have done the year before.

I’m finding some reprieve with the lighting issues and I can use my cell phone again without feeling the EMF sensitivity- which is the oddest thing. I felt like there was a magnetic field around me and whenever I touched the cell phone, it was like a magnet in my fingertips and my eyes felt like I was looking at Kryptonite. I am just trying to keep the full-time job I have, which looks bleak if this cognitive decline continues… but if I had to find one in retail, I couldn’t do it. I am envious of the check-out clerks because I can’t even coordinate the mental efforts to scan an item, bag it, or give change when it is showing me how much to give back on the screen. Too many fluctuating cognitive limitations yet. I often joke to myself that I will know when I have recovered when I can feel comfortable getting a part-time job in retail! I still have many “one day forward, three days backward” kind of days. For example, at lunchtime today, I could barely hold a conversation with someone. It was like I totally forgot how to have a conversation and I couldn’t hold any interest. She would ask me questions and I would totally lose my train of thought mid-sentence and I’m sure it looked like I was totally disengaged, but it was that I had to try really hard to talk to her and connect with her. On Monday, I sat and talked with a group of co-workers for an hour and had no problem with the conversation. One of the most maddening things about this experience has been that things are just so random when they come and go. I had a lot of energy yesterday, and today I could spend all day in bed. I will always link any new health issue to having taken Cipro. Even if I had some genetic predisposition to something, I will always assume a link between that and Cipro and for that fear, I don’t know that a “full recovery” is ever possible, mentally. I think a lot about the ease of my old life sans health issues when I could just pick up and go and do anything I wanted to. I love to travel, garden, cook, etc. I can’t do any of those things right now. It’s just the basics of getting through the day. I used to take pleasure in checking off my calendar at the thought that I was one day closer to recovery, but at a year out, I just think maybe that was faulty thinking. This might just be my “new normal.” I have hope when I look at this site, but if I look at other stories on the internet, I lose hope very quickly. At 2+ years out, are there times when you don’t think about the Cipro poisoning and can have normal days? It is always on my mind, as hard as it is to block out. It’s probably part of the poisoning, I’m sure. I don’t have a hx of OCD, but I’ll wake up in the middle of the night and this is the first thought that pops into my head and then I start to cry and cry myself back to sleep. I still have waves of despair that come on all of a sudden even on “better” days. [Thanks for talking back and forth… it does help 🙂 ]

Yes Tara there ARE times when I don’t think at all about the Cipro! Even though the vision issues are so apparent, I even forget about that sometimes when I am lost in something, like a good play. And I look back at some of the complicated legal research and arguments and motions I did when I was still very “off” and I am amazed. IT was like I was channeling Darrow or someone.

The retail was challenging, mostly because the training was SO bad and there were so many illogical steps, and so many different options. I was on the brink of tears many times, but I felt better when I saw an associate try to run a check through counterfeit bill scanner. 🙂

I’m hoping to get to a period of time when I “forget” that this happened to me and I can say, “Oh, yeah, remember when I was floxed and it was really awful for ___ and then all of a sudden I got better and was fine again?!? Yeah, I almost forgot how awful it was..” Not there yet… 🙂 I saw one of your posts on Ruth’s sites and I had to chuckle because I could so relate to the “hitman” idea… like I said before, it’s a saving grace for me that I have children. I can’t tell you the ideas that have crossed my toxic mind that would NEVER have done so otherwise. At one point I had to practice full restraint from giving into the random idea of running into oncoming traffic while getting my mail the one day… this was at the beginning of this ordeal and I was actually having an “OK” moment, but just that quickly the thought came in. I swear it’s like the devil being released in your brain. There are still times when I get down enough that the random thoughts come and go. Right now the “Cipro experience” is on pause in my brain and I try my hardest to deactivate it in some way. Hopefully this will just end in time.

yeah, I’m surprised I am still here. I don’t have children (or even a pet 😦 ) I live alone and all day, everyday, for most of the first year, I just wanted out. (I chuckle at the hitman idea too now. I think “wow, what would I have actually said to this person?” “You can make it look like an accident if you want, because I certainly don’t want you to get into any trouble on my account.” And I thought I would leave out my “book” that I wrote…almost 100 pages, including a diary of this nightmare.

Try to find things that occupy your time that you enjoy. I would check floxie hope once a day tops…Even better, once a week. If you get emails about new responses, just save them up.

Yes, I do seem to be better when I stay off the sites, but at the same time, misery loves company sometimes. When I am feeling better, I don’t come to the sites as often. When I am feeling terrible, and of course there is nothing that seems to trigger something at this point… it is all random malfunction of some system.. I think, “Oh, here we go again… time to commiserate with the others…”

Madge,
How many times were you floxed? My eye issues came a few months after taking the last pill and then deteriorated quickly. I have a lot of “clumpy” floaters… just maddening to look at all day… I just worry about the health of my eyes in general after this poisoning.

I believe 4 times. The trouble is I moved from the UK to France in 2001. The UK does not let you take your medical dossier with you and I did not find out about floxing till after my second French floxing in 2015. By then my UK medical notes would have been destroyed as I had been out of the country for more than ten years. But from the symptoms I have had I am sure I was floxed at least twice in the UK – in 1989 or 1990 and again in 1999. But both times with delayed reactions . I spent the decade of the 90s knowing there was something wrong and often worrying I had cancer or some other serious problem but looking back I can see many of my problems were probably flox related. I did get a lot better when I moved to France, and also when I had my hypothyroidism and vit d deficiency treated but the French floxings have brought back a lot of symptoms despite those treatments continuing. I have had the blurred vision on waking for years on and off and have mentioned it to the opthalmo but he didn’t seem interested! I regard my eye issues as pretty minor . My main problem is cartilage degeneration in my ribcage. I get a lot of pain there and often wonder if the pain is coming from the ribs or some organ underneath as it can be hard to tell.
At the moment I am struggling with my diverticulitis again. It is three years since my being hospitalised for this and my first French floxing and I have had a few bouts since that I have managed myself with resting and the low fibre diet. But I am terrified of it morphing into a full infection again and having to take antibiotics! It is giving me a lot of backache and bloatedness and I am fed up with the even more restricted diet! My gastroenterologist wants to cut 15 cm out of my colon and she says I have very bad adhesions ( from a hysterectomy in 2000) which make me a ” very good candidate for surgery” but the pain from the divvi and adhesions pulling is not nearly so bad that I am going to risk getting c. diff or MRSA or being given Cipro again while unconscious. Plus the adhesions will just come back anyway.
Most people here including yourself have been far worse hit than me and I admire you greatly in managing to continue to work and look after a family. We all have to just keep telling ourselves that we will heal in the end. I did get better ( maybe 80% ) from the UK floxings but I was much younger. I did not know I had been floxed and did nothing specific to help myself. This time I am much older but can try to help myself

Madge,
It’s interesting that you mention diverticulitis. This is why I took Cipro last year and I woke up this morning with significant lower left quadrant pain and I was terrified that this meant the oncoming of diverticulitis again. I have been nursing it all morning and I think things have subsided for the most part, but you never know! I am so afraid of getting it again for many reasons. I know for sure that my symptoms are related to Cipro and Flagyl. There is no way that you can feel this bad, for this long, with crazy things that are indescribable without it being toxicity. The eye issues alone are things that just don’t happen naturally. My vision was really hit hard, sadly. I think at this point it is just wishful thinking that it will ever be the way it was. I’m only 41, so it is devastating to have so many sight-related issues. I’m just always afraid of what is to come and what is happening “under the hood” so to speak that I can’t yet determine and might not show up for years. I worry about my heart and all the tendon/cartilage issues. I think I have a lot of those issues re: my eyesight. I would have NEVER thought I would have gotten ocular tendonitis in my life. Do you have to wear glasses? I know have prism glasses. I was hoping that they would be temporary, but I fear not at this point in time. 😦

I have worn glasses since I was 9 years old . I was in my late thirties when I believe I was floxed for the first time though I think it is possible I night have taken the FQ’s predecessor nalidixic acid for UTIs in my early twenties. At 41 you have lots of time to heal from your floxing. You seem young to me to have diverticulitis but I am aware that this “oldie” problem is now striking younger people. I am sure that the advice about eating fibre is too simplistic and too much unsoluble fibre from wholewheat grains just makes for extra large stools that stretch the colon and add to the problem. Soluble fibre from veggies is better. I try to steer clear of seedy stuff like berries and pork is a real problem. I eat very little red meat . I eat raw garlic every other day , take a probiotic and aloe vera juice and so far have gone 2 years without any antibiotics. My last floxing was the result of going to the doctor during what I was sure was a divvi attack . I had bladder pain as well which I get with some attacks due I think to my adhesions pulling on everything. He decided I had a UTI and gave me Cipro . Luckily I only took the one pill but when the urine analysis came back – nothing. Really one is better avoiding the doctor. How does your ocular tendonitis manifest itself? I have noticed from time to time my eyes make clicking noises when I move them.

Hi Madge,
I had so many eye issues at the first sign of being floxed last year- eye pain, EXTREME light sensitivity, feeling like my eyes were going to fall out, the sensation that they will “snap” at any moment at times; they are now misaligned, hence the prism glasses. They are always just really sore and “achy.” I had no issues of the kind prior. Re: the diverticulitis… I am living proof that doctors can screw people up! What started as a minor sinus issue evolved into overkill with steroids and antibiotics… I had a horrible reaction (severe sensory psychosis) to high dose prednisone (never took any meds before) that should have never been prescribed, especially at the high dose I took for two weeks) for a minor sinus infection… and then rather than deal with the psychosis, subsequent doctors kept giving me more antibiotics, refusing to render their opinions that I could have had such a bad reaction to steroids. Until it was all said and done, I had steroids, doxycycline for 25 days, 3x Augmentin… and that is when my GI tract went crazy. I had no history of any GI issues, but with all of those heavy medications, I probably had complete disruption. I had a very mild case, but because I was still so “out of it” from the steroids— it is like a reaction to Cipro— I was insanely anxious and thought I was dying (this is before I stopped going to the doctor because I found out they do more harm than good). This is when the young resident prescribed the cipro/flagyl combo. I even specified- since I had read so much about antibiotics after having a reaction to doxycycline- that I did not want anything very potent like the ones with fluoride. He snickered at me and said that they all have side effects and then ended up prescribing those to me. They gave me the first dose- with Tylenol- in the hospital. It wasn’t until about 4 doses into it that I read the pamphlet and about threw up with anxiety. I talked to the pharmacist at the hospital and she assured me that it is very uncommon to have a serious reaction if I am “under 65” and encouraged me to finish all of them “or I could have a perforation.” Well, that certainly isn’t true, because I’m a wreck after all these meds at 41! I think I’m OK as far as the diverticulitis goes. I increased some of my detoxing supplements, so it could be from that also- or nerve pain that migrates. I will still be very careful for the next few days. Things had really settled down for awhile. i do all kinds of probiotics.

I am pretty sure I was floxed in 1999 and was given high dose steroids at the same time for a deterioration in my asthma due to flu. I woke up one morning with the awful sensation that I did not physically exist – that I had no boundary between me and the space around me , it’s really difficult to describe! I was terrified and started to wean off the steroids and the odd feelings went away. But I am now sure the antibiotic I was given for the bronchitis was Cipro as some time later I started to suffer from the rib pain which is my worst floxing symptom. I have “doctoritis” now. My twice yearly visits for my med prescription renewal are difficult even though I like my GP. Talking about my problems that have resulted from being poisoned puts both my heart rate and my blood pressure up. I know there is sod all he can do to deflox me and I get angry about having been prescribed poison when a far less noxious antibiotic should have been tried first. But he is ok about prescribing any blood tests I want done like kidney and liver function or giving the prescription for visits to the physiotherapist for acupuncture. He has also read the research I have taken and does seem to have changed his mind about the safety of fluoroquinolones so hopefully he will be less likely to dish them out to some other poor patient.

Hey Made, really connected with your post. How do you describe the indescribable? Like your eyes seeing two different things because your brain is not automatically putting the two images together? Or so much damage to the olfactory nerves that even a potato smells like an open vat of bleach? Or having no fever, no other common indicators of illness but feeling so sick that you are sure you are close to death? I had SO many things that were beyond description, because they fall outside of ordinary experience.

What I wanted to share though, and I have posted about this before, but wanted to mention it again in case you hadn’t seen it. In my life time I have had bronchitis probably a dozen times. I have had pneumonia 3 times. I have been on asthma meds for decades. I was in fact given prednisone for lingering asthma at the same time I was given the Cipro for a UTI. I was thrown under the bus by a dozen MDs and really had no hope. If the olfactory nerve damage or gasping for each breath continued, I would die—or I would want to. My last hope was an ND.

I was taken there by a friend and could barely shuffle along. We had to go so slowly because each breath was a struggle. (Oxygen would have been of no use. IT wasn’t lack of oxygen. It was either mitochondrial damage to the heart muscle and/or damage to the CNS. And here was the further dilemma. I KNEW that steroids and fluoride, both of which were in my twice daily inhaler, would exacerbate the flq toxicity. BUT I thought, I can’t go off of the Qvar, becaue what if I had an asthma attack on top of already struggling for each breath. IT was an horrific thought. My ND suggested H2O2 IVs. Now one doctor I had seen (the LAST allopath, who was the only concerned one although she only had knowledge of tendon issues with Cipro) had told me she thought the other IVs I planned to get sounded fine but the H2o2 was dangerous. I did my own online research and saw where major hospitals and clinics were using it on lung cancer patients. I decided to trust the ND, the only one who had given me any hope, and started the H2O2 IVs. I saw it as a win/win. Either I would get better (I still really doubted that at this point) or it would kill me (Yea! no more torture.)

After a half dozen of these I started (with some trepidation) to wean off my prophylactic inhaler. I went from two puffs twice a day to one puff twice a day. A week later I went to one puff once a day. Another week later I took the leap and stopped. I continued the H2O2 IVs til I reached around a dozen. That was almost two years ago. Since then I have had NO asthma meds an NO asthma. I did go back for a “maintenance” H2O2. I now have an integrative internist and he said that the high dose vitamin C would suffice for that. It is hard to find doctors or NDs that do the H2O2 IV, but they are out there. I suspect from your vocabulary that perhaps you are “across the pond?” Anyhow, might be something you might want to look into. Oh—and when I check my peak flow, it is the same or BETTER Than when I was on the meds. I asked my doctor what to do on the chance I do feel asthma coming on, and he said to take up to 3,000 mg of NAC.

Madge hirschNovember 4, 2017 at 4:08 pm

Hi L – my asthma has never been very bad and I have gone long periods with very little need for medication. I rarely used the preventative spray although it was prescribed. But last autumn my breathing was bad and I had to use it a bit. This year it’s worse. I find one puff will last about 30 hours so I am trying to limit it and have days where I only use the Ventolin even though there is fluorine in the propellant. I have found that my tendonitis has got worse and my rib pain is awful at the moment and I am wondering if using the preventative spray is responsible or if it’s just another cycle.
I was actually given asthma by doctors. In 1977 I got a cat . After about a year I began to suffer from constant rhinitis and my GP sent me to the hospital ( in the UK ) for allergy testing. They suggested a course of desensitizing injections -18 in all. I had my first attack of wheezing after the 12th one and again after the 13th . Needless to say they were stopped. I come from a family with poor chests and had always had a cough in winter during my childhood but I had never wheezed before. The worst of it was that a couple of years later I met a man who was a drug company exec. His company made the injections. He told me that they only work for about 60 % of people and yes unfortunately they provoke asthma in some poor sods. When I asked him why the doctors don’t tell you this so you can make a more informed choice – a runny nose is better than asthma- he laughed out loud and said “Oh we don’t tell them”.
I now live in France in a very rural area. I have no idea if it is possible to get the H202 IV here . Have you taken so much NAC? I take it every day but only 600mg. Does the vit c help asthma? I read on Mercola that he recommends butterbur . Have you heard of that? I am hoping that once winter sets in and the mold spores reduce my breathing will go back to how I usually am like last year. I the meantime I am going to ask for a change to Symbicort. The steroid in that is not fluorinated.

LNovember 4, 2017 at 5:26 pm

hey madge, glad you are not taking the inhaled steroids. I think it is reasonable, in spite of the fluoride to have the Ventolin.

I actually got those shots for five years and they did help, but that was about 15 years ago, and the effect apparently was not long-lasting. I am very allergic to cats, which is a shame. I am a huge animal lover, and if I had no allergies I would have a room full of dogs, cats, rabbits… Actually some day in the future when I move I hope to get a dog again I have no problem with certain breeds.

I actually had to move from seattle, even though I made more money as an actor there than anywhere else because of a horrible mold allergy. I remember doing Shakespeare in the park and at the end we had a very simple, non-demanding dance. A couple measures in I was gasping an wheezing. Mold is definitely my kryptonite.

I find if I don’t take NAC daily I get congested. I have been taking it now for a few months, trying to deal with unending allergies and a stuffed nose. I have never taken more than the one tablet which is 1,000 mg. You know I have read nothing but good stuff about it (including being a precursor to glutathione) , and then was disappointed to read an article by mercola that was not positive. It was the only one among dozens I read. going to ask my integrative md about it.

Regular vitamin does nothing for me as far as asthma, but I have read that the high-dose IV C turns into h2o2 in the cells. I haven’t gotten a high-dose C IV but the ones I was getting were 50,000 mg.

I have an arsenal for “just in case” I get sick. First, I started taking astragalus. Then I have oil of oregano on hand, which I have used for flu, colds, sinus infection. I also have olive leaf extract, sambucus and Echinacea, so at the first sign of anything, I’m armed! I would also likely go get a high dose C IV. And yes, I have heard of butterbur but did not add it to my arsenal. Not sure why.

I wish you could find a way to avoid the steroids all together. If you can find IVs anywhere, I would first opt for high dose vitamin C and see how you do.

Tara. How long did it take for your ear noise and ear pressure to go away?? Do you think your ear noise was actually a form of tinnutus?? My ear noise started out a couple of months ago just roaring like jet engines but now is more like a constant low throbbing buzz although fairly loud. You mentioned your’s finally went away. Do you remember how long before it was gone and did you have it the whole time from the start??

LNovember 5, 2017 at 10:12 am

yeah, I’d like to know that too because I am 2 years, 9 months out and it is constant. It is definitely tinnitus. I assume, since I had body-wide nerve damage, it is related to that. I have tried different suggested supplements and it is not budging.

L. I know Tara said hers went away. I was just wondering when in her recovery it went away. Ruth said hers went away in a couple of months? I know that doesn’t help you since you are mostly recovered but I sure hope that your tinnitus will calm down in time for you!!!! The good news is that you are recovered and enjoying your life again!! That is a blessing considering what you went through!!

High dose Vitamin C iv’s cannot be given until you have a blood test that tells your C level.

LJune 17, 2018 at 9:30 am

That is correct. The test for high dose vitamin C IV is the G6PD. There is a certain, small percentage of the population who cannot do the IV…but if you are getting the IV from a reputable doctor, they will know this, and will not give you the IV before you are tested.

Hi Deb,
I had mine for a year but I also had flagyl with the Cipro so yours might not be as long. I went without my prism glasses for an entire day over the weekend with no pressure. I still have a lot of eye issues- blurry vision, dry eyes, floaters, etc. I started back with the IVs and my energy has improved. How are you?

Tara, soooo glad to hear you have made a little improvement! Like L said this is your year!!! You will get there!! Keep the faith!! What kind of IVs are you getting and how often? Glad they are helping you!! I am hanging in there starting into my 6th month. Still dealing with brain fog, anxiety, pretty loud ear noise and waking up suddenly at 4/4:30 am everyday! I am hoping it will start going away in the next 3-4 months!!! 🙏🏻🙏🏻. I have thought about you and keep you in my prayers for more healing to take place for you to a full recovery!! Don’t give up! You will get there!!!
❤️Dee

TaraNovember 28, 2017 at 8:36 pm

Dee,
Thank you! I actually felt like I had hit a wall a few weeks ago as I hit the year mark. I felt physically, emotionally and mentally drained- like I had absolutely nothing to give anymore. I decided to take a medical leave from work and fortunately it’s paid and my coworkers have been really supportive this year. I needed some time to just process what happened to me and try to deal with the psychological aspects so that I can return to work with more clarity and focus. I have been getting Myers cocktails, glutathione, and we started with some chelation therapy. I also did some vagus and trigeminal nerve stimulation and that really helped to reboot my autonomic nervous system. My anxiety has been significantly decreased. I did that with a chiropractor who is a functional neurologist. I also did some eye training since my eyes stopped teaming together. The biggest thing for me right now is still the numerous vision issues. I am handling store lighting better after the nerve stimulation. I would recommend that to anyone. My nervous system seems more balanced after a few sessions. Instead of anxiety, I am now angry and trying to process the anger that goes with this experience. On a positive note, I was able to cook the full Thanksgiving meal this year. I have also been able to watch TV again and go to the movie theatre. I also ate popcorn and drank a diet coke and decaf. Coffee just so I could feel “normal” again. I won’t make these things a habit anymore like I had before, but it was nice to be able to do those things without my body crashing. I am able to eat all the foods I did before if I choose, but I actually prefer eating healthier so I’ll continue with it. Since getting floxed I do get sick more often. I could go years without getting ill but right now I have a roaring sinus infection and I’m trying my best to avoid antibiotics like the plague! What started this disaster is a doctor prescribing prednisone for a sinus infection… And it all went downhill from there! I did take oil of oregano and I seem to tolerate Mucinex OK. Things I could get over in a few days now seem to linger for weeks. Hang in there! We’ll continue to support each other through it!

Tara, it sounds like you found some good resources to help you out a lot! I am really interested in the vagus nerve stimulation with your chiro! Maybe you could tell me a little more about it?? Didn’t you have an issue with waking up very early and not going back to sleep? Is that still happening or has that mostly resolved? My nervous system got it hard too and I’m hoping it will calm down sooner than later! Do you remember when your ear noise or tinnuitis you had went away for you? I don’t know if it is low level throbbing ear/head noise or a form of low buzzing tinnutus? Probably tinnutus that is not the usual high pitch noise! Anyway you mentioned you had something similar so was just wondering when it got better for you? When did you feel you anxiety and sleeping really improved for you also? I know your eyes got it hard and I am glad that they are starting to show signs of improvement!!! That is awesome for you! I am a coffee drinker too and miss it a lot in the morning! I always wondered if decaf would be OK to drink while healing or if is still bad??? Anyway…. So glad you are concentrating on taking care of yourself!!!! Good for you Tara!!!! Dee

Tara, in regards to your sinus infection my homeopathic Doc suggests “Argentyn 23” collidial silver. (Bio-Active Silver Hydrosol). You put a teaspoon in your mouth and hold in mouth 30 sec at least or he says up to 3 min as best absorbed in mouth. If you are fighting infection you can take more doses during the day-per directions on bottle. You can also buy it on amazon I found out after buying from him! You might look into it!! D

TaraNovember 29, 2017 at 12:58 pm

Dee and Deb and anyone else in need of support through this very difficult time- my email is tara116_99@yahoo.com
It’s probably easier to communicate that way than to use threads…

helenaNovember 29, 2017 at 3:36 pm

Tara Im so happy that you are improving and are able to do more stuff. Also glad that you are able to go back to eating and drinking stuff that you werent able to prior.Thank you for giving support to others who are in similar situations as you.

DebNovember 30, 2017 at 2:38 pm

Hi Tara,
So good to hear from you and to hear you are doing so much better! I will be emailing you soon. Thanks much for your email and for supporting us while we are struggling to find our path. I am doing some better. I have ups and downs. It’s been a hard few days after I did an infrared sauna. But I am getting a little bit better. Regarding your sinus infection, I took oil of oregano and it helped a respiratory infection about six weeks ago. I had a fever so it wasn’t just a cold. I think it’s important to have support through this process.

Anyone here experience eye tightness or pain behind eyes, accompanied by light sensitivity? I had perfect eyes, no sinus issues, and 48 hours after taking Cipro I went to the ER with an eye emergency. An eye examination determined the eye was healthy, so the guess what that it was an immune response to the medicine, tightening tendons or maybe even sinuses being attacked. 2 months later, I have swelling under the eye and still some aching pressure in sinus areas. Any ideas what this crap does to the orbital area?

Deb, Yes. We have Cytochrome P450’s in all the cells of our body but most concentrated in the liver. They help neutralize toxic effects of many many things we are exposed to. The concentration of P450’s is reduced significantly when we are toxic with something – whether it is heavy metal or other environmental toxin…anything that overloads our system can compromise how are P450’s show up and do their work In our case- it is the fluoroquiolone toxicity. So this impacts our liver’s ability to neutralize the toxic components of FQ’s (because we have less P450). This is one of the reasons it is important to do liver detoxes in the correct way – supporting phase 1 AND phase 2 detoxification processes.

Hi Sujata
I’m 4 mounths out of Cipro my worst symptoms are:P.neuropathy on hands feets ,face eyes…very painfull.. ..do you have some advice for me?I ‘ve search for a doctor but here in Italy all deny this is a Cipro effect!
Thank you
Betty

Hi Betty,
Can you tell me more about your symptoms on your face and eyes? I’ve experienced the same things and it’s maddening! Do you have floaters? What are some vision difficulties you experience? I’ve probably had them all!
Tara

I had significant issues after taking Cipro, including extremely low energy. I’m a lot better, but after addressing or getting over too many symptoms to mention, I started trying to figure out how to increase my energy levels. What really helped me was lifting weights and taking the supplement Creatine. I tried taking it when I was young, and lifting heavy, but quit because I couldn’t tell it did anything. But this time, it made a big difference. My energy is much better. The idea of trying creatine again came after reading articles on its effect on mitochondria … both creatine and weight lifting. Anyway, it seemed to work. On the negative side, I got really strong again, and started lifting heavy … and tore my pec (muscle/tendon?). I get an MRI this Friday to see exactly what’s wrong. While I had a little tendon pain after the Cipro, I was hoping it wouldn’t be that big a deal. I may have to change my exercising if my tendons can’t take it. Anyway, thought his my help someone.

I mean come on? We are all suffering what she did! If I come out the other side and know how to help others I sure as hell wouldn’t charge someone!!! Majorly taking advantage of someone! Most of us can’t even work during this time where am I going to get 1000.00?!? Makes wonder if she even went through it. I hate this to say that but just wow…